Doctors aim to stop pancreatic cancer before it forms

Paula Rhines, a clinical consultant residing in Fort Lauderdale, is back to work after being treated for a pancreatic cyst at Hopkins.

Paula Rhines, a clinical consultant residing in Fort Lauderdale, is back to work after being treated for a pancreatic cyst at Hopkins. (Carey Wagner, Sun Sentinel)

Meredith Cohn, The Baltimore Sun

Seeing a chance to stop one of the most deadly kinds of cancer before it forms, doctors at Johns Hopkins and at other hospitals around the nation are focusing on the common pancreatic cyst.

Up to 20 percent of pancreatic cancer begins as one of these small, fluid-filled brown lesions. And left to grow unabated, pancreatic cancer kills 95 percent of sufferers within five years.

"We have a wonderful opportunity to intervene at an early stage," Dr. Anne Marie Lennon, an assistant professor and director of a new Hopkins Multidisciplinary Pancreatic Cyst Program. "We can intervene like we do for polyps in the colon. We remove them and prevent cancer."

Hopkins has long been a center for pancreatic cancer treatment and research, along with hospitals in Indiana, Illinois, Massachusetts and elsewhere. But this is the first time Hopkins has dedicated staff to cysts that may become cancer. The program,formed in November, sees about 10 new patients a week.

A study last year published in the American Journal of Gastroenterology found that up to 13 percent of the population has a pancreatic cyst, though most do not become cancerous. Researchers studied patients who had undergone an MRI for a reason besides their pancreas, and such routine screening has become the main method of discovering pancreatic cysts.

Doctors don't believe the number of cysts is growing — and they aren't even the biggest source of pancreatic cancer, which is less common than many other cancers. There are about 43,000 cases a year nationwide, compared to more than 200,000 cases each of breast, prostate and lung cancer.

But pancreatic cancer is among the mostdeadly, taking about 36,800 lives annually, according to the National Cancer Institute, and spotting it early is the only chance for a cure.

Paula Rhines is one of the Hopkins center's success stories. The 41-year-old sales representative, who lives in Fort Lauderdale, Fla., recently had an early cancerous tumor removed at Hopkins.

It was discovered during screening before Rhines had her gallbladder removed in 2006. Doctors in Florida watched the cyst over the years, and when it started growing they still didn't think it was dangerous. They advised her to seek a second opinion.

After a Web search, she picked Hopkins, where doctors did a round of tests similar to the ones she'd had in Florida, including a CT scan, MRI, endoscopic ultrasound and biopsy.

But the Hopkins team found the results concerning and recommended surgery "sooner rather than later," Rhines said. In March, she had a 7.5-hour surgery called a Whipple, or a pancreaticoduodenectomy, in which the head of the pancreas and the tumor were removed, as well as the gallbladder, common bile duct and partof the small intestine.

After the surgery, the lab confirmed the cyst was a type that grows within the pancreatic ducts and often develops into invasive pancreatic cancer.

"I feel like someone is looking after me," she said. "This would have progressed into something not good, but they took care of things before it became too late."

Though she's still a bit fatigued, she's now back to work, taking just an occasional Advil and expecting nothing more than a follow-up visit or two a year. Fatigue and trouble eating are the most common complaints after surgery, though they ease over time, said Dr. Christopher L. Wolfgang, an associate professor of surgery and oncology at Hopkins.

He and Lennon said Rhines had pancreatitis after the gallbladder surgery, or inflammation of the pancreas, a gland housed behind the stomach that releases insulin to regulate blood sugar and digestive enzymes to help digest and absorb food.

Sometimes pancreatitis is caused by a cyst or leads to one. Those caused by the condition are often pseudocysts, which are benign pockets of fluid that don't normally have to be removed. But those that can cause pancreatitis, like Rhines', are known to become cancerous.

Those with pancreatitis need to be screened and considered for major surgery, the only method of removing the cysts, the doctors say.

But screening isn't for everyone, Wolfgang said. The cost of all that screening and the potential for unnecessary surgery is too great. For now, those who discover a cyst inadvertently should be evaluated. At Hopkins that would include seeing a team including gastroenterologists, surgeons, radiologists, pathologists and others in determining treatment.

There are guidelines for treatment of some of the more dangerous cysts, such as Rhines', developed by an international group of specialists, which included Wolfgang. The group is about to release a revised set, but the doctor says they still recommend the invasive surgery to ensure cancer — and the potential for the ailment — are cut out.

Those who are found to have cancer also generally undergo chemotherapy. They need regular screening because the chance of recurrence is high, Wolfgang said.

For now, there is no precise way to determine exactly who needs surgery, said Dr. C. Max Schmidt, an associate professor at Indiana University and director of the six-year-old Pancreatic Cyst & Cancer Early Detection Center, which sees 1,000 patients a year.

Researchers are investigating a genetic marker that would indicate a person's likelihood of developing pancreatic cancer, as is done with breast cancer. For now, Schmidt said he ranks patients based on the available tests. Those with low risk are monitored, and those with high risk are offered surgery.

He said those with certain cysts and those who have a family history of the cancer fall in the high-risk category. "We have two opportunities to cure or prevent cancer," he said of those patients.

Schmidt said he launched a new website called pancyst.org in an effort to reach people with symptoms or family history or who inadvertently discover a cyst so they get to a specialist. Symptoms include abdominal pain, nausea, vomiting and diarrhea. Sometimes, patients have yellowing skin or eyes because the bile duct is obstructed.

There still are few clinics like Indiana's and Hopkins', though more university-linked hospitals are developing multidisciplinary programs to better assess cysts, Schmidt said.

"There has been so very little hope with this cancer, and that's the message that has been sent across the airwaves," he said. "And unfortunately, there really hasn't been well-coordinated screening across the country. But there is hope for these patients if we reach them and intervene."